PPTA is concerned that access to therapies and important protections for vulnerable patients with rare diseases will not be included in the Better Care Reconciliation Act (BCRA). In an effort to end what they consider a failing exchange system, Senate Republicans are trying to garner enough votes to proceed to debate on repeal.

The draft versions of BCRA, with various amendments, would allow changes to the Essential Health Benefits that patients who use plasma protein therapies rely on. These include:

1. Prohibit lifetime and annual caps on coverage2. Prohibit being denied coverage because of a pre-existing condition3. Allow dependent children on their parents’ insurance until age 264. Limit maximum out of pocket costs for patients

Since access to plasma protein therapies to treat primary immunodeficiencies, alpha-1 antitrypsin deficiency, hereditary angioedema and bleeding disorders, such as hemophilia, is so vital to patient well-being, PPTA is telling Senators to vote NO on the current motion to proceed. The four patient protections must be included in whatever health care legislation moves forward in Congress.

July 25, 2017

Membership

PPTA News

The article, “How Blood-Plasma Companies Target the Poorest Americans,” by H. Luke Shaefer and Analidis Ochoa, published in The Atlantic on March 15, was unfair to plasma donors as well as to individuals living with rare, genetic, and chronic diseases who rely on access to plasma protein therapies. Plasma donors are due our gratitude and respect, not sweeping negative characterizations.

Highlights from the 2018 IPPC +

Mr. Jan M. Bult, President & CEO, PPTA, opened the well-attended IPPC 2018 by welcoming the more than 300 attendees to Budapest. PPTA thanks its sponsors who help make the IPPC possible every year. Download the IPPC app (available in the Apple AppStore and Android Market/Google Play) for Apple or Android devices) for a complete list of sessions and many of the presentations.

GLOBAL INITIATIVE DRAWS ATTENTION TO RARE DISEASE TREATMENTS +

Budapest, HUNGARY (March 13)– The Plasma Protein Therapeutics Association (PPTA) today unveiled its new global initiative, “How Is Your Day?” –Making the difference with plasma proteins, in conjunction with the annual International Plasma Protein Congress. “How Is Your Day?” will focus on differentiating these unique therapies from traditional pharmaceuticals and building awareness of the value they provide for people living with rare, life-threatening, chronic, and genetic diseases.